It’s finally getting warm here in New England, and most of us have plans to enjoy the beautiful weather. And that’s why the Centers for Disease Control and Prevention (CDC) recently released a report raising awareness about how to prevent the tickborne infections that typically occur during this time of the year. Lyme disease is probably the most well-known, and the one for which diagnosis and treatment are most controversial.

What is Lyme disease?

Several countries around the world, especially in the Northern Hemisphere, and all 50 states in the US have already reported cases of Lyme. The disease is caused by bacteria called Borrelia, and it is spread by ticks. One of the biggest controversies surrounding Lyme is determining whether or not someone has the so-called persistent or chronic Lyme disease. The CDC and most specialists prefer to use a different term, post-treatment Lyme disease (PTLD).

What is post-treatment Lyme disease (PTLD)?

Most people diagnosed with Lyme do very well after taking a prescribed course of antibiotics. They can go on with their lives, and they never have any long-term complications. However, doctors noticed a subset of patients who develop symptoms that can last for months and even years after treatment. PTLD symptoms are vague and other illnesses present in a similar way: fatigue, brain fog, numbness, tingling, palpitations, dizziness, aches, and pain. There are a few case studies in the medical literature describing people who continued to have evidence of infection despite adequate treatment, but in most cases there is no laboratory proof the bacteria is still present.

Conventional medicine has a hard time treating something we cannot see or isolate. However, we cannot ignore that people’s lives changed after the diagnosis of Lyme disease. Their suffering is real. And the frustration is widespread. On one side, we have distressed patients tired with the lack of answers; on the other side, we have doctors who cannot find a biological proof of what is happening. Finally, we have an economic system where insurance companies regulate payment concerning how we diagnose and treat diseases. Physicians typically must see a patient every 15 to 20 minutes and find solutions that fit their goals, with little time to listen and address vague complaints. Lyme disease is the poster child for the disconnect we have in our current healthcare system. This scenario led a group of patients and clinicians to get together to seek solutions for this problem.

The main controversies surrounding Lyme disease

The blood test the CDC recommends to diagnose Lyme checks for an immune response to the bacteria, not for the Borrelia itself. That’s why the test can be negative if the disease is present for less than a month. It takes at least a couple of weeks to mount an immune response that would turn the test positive. It is easier to diagnose Lyme if you have the classic bull’s-eye rash that shows up a few days after the tick bite. In these cases, testing is not even necessary. But the rash only shows up in 80% of cases.

If making a diagnosis can be complex, the controversy about the treatment is so intense that some have even coined the dispute “Lyme wars.” The clash emerged from doctors’ offices, and spread to public hearings in statehouses around the country. One of the main points of contention is the duration of antibiotic treatment — not only for acute Lyme but also for PTLD. The evidence to recommend a specific length of antibiotics treatment is scarce. Most physicians follow the two- to-four-week treatment the CDC recommends. Some studies funded by the National Institutes of Health did not show any benefit when patients used several months of antibiotics. However, there is anecdotal evidence from a few patients who improved after months of antibiotic treatment. The naysayers believe this is probably due to a placebo effect.

A reasonable approach to post-treatment Lyme disease

If you are being treated for PTLD, there is no magic bullet to treat this problem, but here are some important steps to consider:

• Choose a doctor you trust and who can work closely with you.
• If your doctor agrees to start antibiotics for several months, make sure you talk about the risks and cost, as this can be dangerous and expensive.
• Make sure not to rely solely on antibiotics. The evidence for a benefit from antibiotics is weak, and we rely mostly on physicians’ clinical experience and interest in the disease to design a personalized therapeutic plan. For some, a more holistic approach may be the way to go.
• If you try supplements, ask about their source and purity, as they are not FDA-regulated.
• Consider looking for services in medical school hospitals or clinics where they may have programs with ongoing research on how to diagnose and treat Lyme.

I know there are many people who have experiences to share. This dialogue is vital to spark an open conversation in the medical community. We have to understand and provide more comprehensive and better care to patients. I see the “Lyme wars” as an advance in health care. Patients affected by a disease got organized, and together with like-minded doctors rallied to shed light on what works best for them. It reminds me of the progress in treating HIV/AIDS. In the 1980s and ‘90s a similar community spurred a drive to fund more research. Because of that research, although we still do not have a cure for HIV/AIDS, it is no longer a death sentence. I am hoping in the years to come more research drives better answers for Lyme the same way it did for HIV.

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